5.10.2010

How the world did we get here?



As I find myself in a constant state of reflection, tonight I have the thought "How the heck did we get here?" Frankly, *it* life with kids up to this point has become a fluid blur. I'm sure most people feel this way in their individual lives, yet I'm nearly certain it isn't constant. A favorite quote, "Life is what happens while you're busy making other plans." - John Lennon - furthers the concept of time warp our family's short history has become. I'll intro our family with a writing I did last December, of our journey into Autism.

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We have four children: Bella 6, Roo & S-bear 4, SJ 2.
ALL four have been diagnosed with Autism.




At Bella’s first well-baby checkup the pediatrician said, “She will be fine”… “It’s the little ones with Autism who break my heart; they often struggle to fit into society.” He was trying to offer encouragement because our baby had been born with Down syndrome. For the first time, I read about Autism during late-night research.


We became pregnant again with twins when Bella was 16 months old. The pregnancy was difficult; they arrived 6 weeks early after 8 weeks preterm labor. They were beautiful and a handful. They had no apparent health problems & were home in one week.

Hectic, but joyful, we survived that first year. At nearly 3 years old, our first concerns arose about Bella’s peculiar, obsession of dangling of objects. She was evaluated & diagnosed with sensory integration disorder. We accepted the odd behavior as one of her unique characteristics. We know now, God was conditioning us.


At 12 months, our twins (Roo & S-bear) were speaking the same words and developing normally. Shortly after receiving 12-month vaccines, S-bear changed completely: no eye contact, wild tantrums, lost language, overall withdrawal. His symptoms were subtle compared to some kids, but heartbreaking because we knew something went very wrong. He began therapy & we focused on helping him rather than the diagnosis. Research resumed. All the kids started the GF/CF diet for simplicity, & with positive results. Around this time, we discovered our surprise pregnancy.

We honestly don’t remember much about that time. It was a sprint, like nursing Bella to open-heart-surgery, remaining pregnant with twins, & caring for 3 small children in the twins’ first year. In S-bear’s first months of therapy we were just getting by; I was so sick with my pregnancy that covering basics was difficult.

We focused on fitting therapies in so the children were kids first. Roo began to show quirks: pronominal reversal, hypersensitivity to sound/light, yet spoke in conversation by two. Bella was just maintaining when following our last child’s birth (SJ) when she lost most language and withdrew, stimming incessantly; she was 4. S-bear’s Autism diagnosis came months later at 31 months.

Fast forward... it’s 1.5 years later; Bella was diagnosed with ASD this summer. Sadly, SJ (our baby) had regressed shortly before & again we received the third child's Autism diagnosis. She was GF/CF, vaccine-free-- Autism didn’t care. We crumbled, hit rock bottom, and then came out fighting-- mad as heck.

Roo’s struggles became glaring after starting preschool this fall. Following more research, we wept again. Our sadness was recognizing her reality… knowing she doesn’t fit in & the one she wants to be with most (S-bear) often cannot reciprocate her gestures. The neuropsychologist phoned us yesterday confirming her diagnosis.
Life with Autism has been a whirlwind, a marathon & a fight for progress. We will make a difference on this journey. We will take our last breaths knowing we did everything possible to recover our children & our walk with this cross has not been without purpose. God help us.

Written by a mother, T. -- Dec. 4, 2009



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